Welcome

Welcome to the POZ/AIDSmeds Community Forums, a round-the-clock discussion area for people with HIV/AIDS, their friends/family/caregivers, and
others concerned about HIV/AIDS. Click on the links below to browse our various forums; scroll down for a glance at the most recent posts; or join in the
conversation yourself by registering on the left side of this page.

Privacy Warning: Please realize that these forums are open to all, and are fully searchable via Google and other search engines. If you are HIV positive
and disclose this in our forums, then it is almost the same thing as telling the whole world (or at least the World Wide Web). If this concerns you, then do not use a
username or avatar that are self-identifying in any way. We do not allow the deletion of anything you post in these forums, so think before you post.

The information shared in these forums, by moderators and members, is designed to complement, not replace, the relationship between an individual and his/her own
physician.

All members of these forums are, by default, not considered to be licensed medical providers. If otherwise, users must clearly define themselves as such.

Forums members must behave at all times with respect and honesty. Posting guidelines, including time-out and banning policies, have been established by the moderators
of these forums. Click here for “Am I Infected?” posting guidelines. Click here for posting guidelines pertaining to all other POZ/AIDSmeds community forums.

We ask all forums members to provide references for health/medical/scientific information they provide, when it is not a personal experience being discussed. Please
provide hyperlinks with full URLs or full citations of published works not available via the Internet. Additionally, all forums members must post information which are
true and correct to their knowledge.

Author
Topic: shingles survey (Read 5523 times)

ChicagoMike

Not sure if I have early stages of shingles or just reaction to Katetra/Truvada. Sensitive skin started in upper left thigh and has progressed to my left foot. Is very sensitive to touch and have had symptoms for about 4-5 days. I have been on meds for 6 mos now without any major side affects. My latest tcell count was 800 and viral load 1,500.

Am interested in hearing from others that have had shingles;

1. Did your symptoms start in a small concentrated area, then escalate to a larger area? I think shingles are usually only on one side of your body??

2. Did sensitive skin progress to blisters in a short period of time? (I do not yet have blisters after 4-5 days)

It does rather sound like shingles. Don't mess around with it, get seen by a doctor as soon as possible. Forget the OTC products, if you do indeed have shingles you need to be treated with valacyclovir or acyclovir and you can't get that OTC.

1. - yes and yes.

2. - In my case it did, but it can also take a few days.

3. - about three weeks from the rash first appearing.

4. - Please see above.

5. - Yes, you can get reocurrences.

Hope that helps Mike. Get to a doctor first thing tomorrow. If it is shingles, the sooner you start on the meds for it the better off you will be in the long run.

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

I had shingles in 1994 about 1 1/2 years after I was diagnosed with HIV. I was starting a new job which was stressful. I had blisters from the back of my head to between my eyes. I went to an urgent care center because I didn't have health insurance at the time and they sent me to the emergency room because there was a chance I could have blisters in my eyes, which would have been bad. It looked horrible for a couple of weeks, like I had been in an auto accident. I can't remember what medication they gave me. I still have scars on my scalp and between my eyes. I have not had another blister but once or twice I have felt them "flare up".

Interesting aside, when I went to the emergency room the doctor asked me if I could come up with $300 for medication. He said if I didn't have the money he would admit me to the hospital and they could give me the medication through I.V. I asked if I couldn't afford $300 how was I suppose to afford an inpatient hospitalization? He said "just pay $20 a month and they can't do anything to you." Just another example of how screwed up our healthcare system is.

I had them several times during the late 1990s, Mike. Fortunately after my CD4 counts improved I’ve not had them since.

Shingles develop along nerve pathways. I had them each time beginning in the lower back and wrapping around my side to my groin.

My first suggestion to you would be to get this checked as soon as you can. The sooner they are treated, the less they will develop. It's common that shingles are very painful. Mine (for reasons only heaven knows) were uncomfortable and sore but not excruciatingly painful, just terribly terribly itchy, especially once they begin to heal.

When I had them, I had no clue as to what they were. Went to the clinic, they were treated and gone. I kind of remember they are caused by nerves and tend to start on your side and the little outbreaks follow the nerve endings.

My friends mother said she had them twice that same year and her husband had them once in the same year. Guess it was a good thing for them there is a nurse in the family. Have the best dayMichael

Is shingles common for people with HIV/AIDS? Now you guys have me all freaked out!

Logged

"Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure. It is our light, not our darkness that most frightens us. We ask ourselves.."Who am I to be brilliant, gorgeous, talented, fabulous? Actually, who are you not to be?"

I have had them on several occasions. The worst time being back in 1989(four years after being infected). It started with a small itching spot, on the left side if the stomach. I thought I had spilled some chemicals on me, from work at the time. Within 24 hours, they had blistered, and were traveling around my left side to my back.

I wasn't feverish or otherwise ill, But, I couldn't walk for about a week, due to the extreme nerve pain. The pain lasted after two weeks, and I woke up one morning, and everything was normal again. Still have a couple scars, and some areas on the abdomen and back, that have no feeling.

I used calamine lotion, to help relieve the itching, and wore very light clothing, or no shirt, for a couple of day. Anything against the skin was painful. Overall the after effects of the blistering lasted about 3 weeks.

I have had two reoccurring bouts with shingles, both times toward the end of 2003 just before and after starting on meds.both of those times, were no where severe as the first time.

Is shingles common for people with HIV/AIDS? Now you guys have me all freaked out!

Don't know, let's hear from the old timers. I do know my ex-boss on Wall Street had it during a stressful merger. Hetero female. not sure about her HIV status - neg I assume. I think it's more of a stress thing. I imagine HIV doesn't help

hi,I've had shingles, it started as a rash, with blisters, it was severe and gave me viral encephalitis which put me in hospital for about a week. Shingles runs along a nerve, mine was from the centre of my chest just under my breast round to my back (I think the fourth thorasic nerve?) The blisters(watery and small, truning bloody several days later) appeared within 24 hours and my doctor said the only treatment (acyclovir) was effective only within 48 hours-long after the rash appeared so it wasn't initially prescribed (although I was on drips of the stuff in hospital). It can be a nasty and painful illness so I'd get it looked at to be on the safe side if i were you. Four years later and I'm still getting pains along the nerve, normally when I'm stressed out. I've had about three further 'flare ups' but managed to get acyclovir in time to stop it dead in it's tracks, now I know what to look out for. Hope all is well

Logged

ChicagoMike

It is awsome that I have you guys as a resource, I really do appreciate your responses. My doctor is one of the best in Chicago, Dr. Vacarro and I will call him first thing in the morning to book an appointment. I agree that action is necessary and will help in the fastest recovery.

If you cannot get a timely appointment with your doc, don't be afraid to go to an ER or your GP - anywhere where you can get in asap. The sooner you start treatment, the better off you will be.

When I started coming down with shingles, I was staying at a hotel during a three day training thingy for work. I got a taxi around midnight (when I was sure it was shingles) to take me to the local ER, explained what was going on and that I was hiv positive and I was soon seen by a doc who prescribed me what I needed - although only enough for a couple days. I saw my GP for more meds when I got back home as I was already scheduled (routine) for my hiv doc the following week.

There is also a lot of evidence that taking something called gabapentin (trade name Neurontin) is better for the pain than anything else and there is also evidence that it can help prevent the lingering pain that some members have mentioned. (it's called post-herpetic pain) I used it during my outbreak and although it took a few days to kick in, once it did it was very good. Also, I have never had any post-herpetic pain, something I attribute to taking the gabapentin. Ask you doctor about it - write both names down and take it to your appointment so you don't forget. This drug is normally used in psychiatry, but it also works for nerve pain and many people with peripheral neuropathy take it.

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

I had my first outbreak in January of 2003. It was before my diagnosis. They were treated with a topical cream (I forget what). They went away, but I found out later that it was a case of my weakened immune system basically overlooking them. Last summer, three months after my diagnosis, and when my immune system was going through reconstitution, they came back with a vengeance in the very same spot (chest, wrapping around to the back). It was the worst pain I have ever felt. I pray that nobody ever has to go through that.

I worked on the data processing of acyclovir toward the end of its drug development. It is one of the safest drugs on the market. You really should go to a doctor and get the oral medications as soon as possible. If you let the blisters go, they can cause permanent nerve pain called post-herpetic neuralgia. The treatment is well worth its cost and the nuisance of going to a doctor. The more advanced your age, the more likely the pain will not go away. Taking an oral med gets it to the virus more effectively than applying a cream on the surface.

My HIV test sample was drawn in August, 1985, but my results didn't come back until 12/12/1985 because they tested me for everything else first (there were insurance issues of having an HIV test on your record then). I got shingles about 2 weeks into the following January, on my flank, wrapping from my navel to my spine. I had blisters on blisters...luckily, I have no post-herpetic pain, but I do still have itching in the area of my back where the nerve originates. Since that initial outbreak, I have had 2 others, but rushed to the doctor as soon as I saw what was happening and got meds. These didn't have nearly the same severity as that first occurrence.

In 1984-85, when I was in the fourth grade, I got shingles really bad. Up my arm, down my side. It was a couple of years before my HIV test and it was the first, real sign that my immune system was compromised.

No shingles problems until 1997. My counts had been on the steady decline, and I had a small outbreak on one of my love handles, and still have a scar.

Glad you're going to the doc, Mike. It can get cleared up pretty quickly once you take action.Shawn

ChicagoMike

My doctor doesn't think it is shingles. Says I should have had blisters by now as the original pain started in my groin over a week ago and my rash is extremely mild. Thinks the reddness is from my rubbing my thigh.

Also, I woke up this morning and the pain was greatly reduced. So looks like a possible false alarm. Will let him know if pain comes back or blisters appear.

i supposedly have test positive for hsv 1 & 2. I say supposedly because i've never had an outbreak of anything. I understand this is herpes, but is it possible to be a carrier but not be subject to outbreaks ? If it did outbreak, would it be shingles or is this a totally seperate thing 'chicken pox'?

I'm all confused about this and never understood. Just know i've never broken out from anything, but did have chicken pox as a kid.

Can we get a very short primer on what this is? Sorry to sidetrack this, but i'm not really sure what shingles is.

You can go to www.webmd.com and type in shingles and learn all about it.

All i know is my daughter had shingles when she was little. I thought it was ringworm when i saw the blisters but it was shingles. The dr told me it was related to the chicken pox virus and it was kinda rare for little kids to get it. She was about 7 at the time. THe only good thing is its not painful in kids like it is in adults. My aunt thought she was having a heart attack but it turned out to be shingles.

The only "lifetime" outbreak I have had was a "rash" of some kind that started small and it spreaded all over my body including my face. The doctor gave me some Flukazoid ? To help with the itching and the spreading of the rash. My skin peeled all over like you would peel an orange, hands, face and feet etc...

It lasted for about a few months, didin't end until everything that was skin peeled of for the new skin. No blisters or scars Thank God.

The first time we get "herpes zoster", it shows up as chickenpox. Later in life, the virus, which will have gone dormant inside nerve tissue, can reactivate and emerge again as shingles. Herpes Simplex Viruses 1 and 2 are coldsores and genital herpes, although I no longer remember which one is which. I do know that you can have both just about anywhere on your body if you are immunocompromised. A good rule of thumb is that if you have any itchy or painful blisters anywhere, get them checked. They can be passed along (don't let yourself be exposed to anyone with active chickenpox, for example) as we all know.

My understanding is that cd4 count is not really a factor in determining who will have an outbreak. Stress may be a bigger factor. I have heard of healthy HIV- women who had outbreaks just before their weddings from the stress of all the planning. Also, HIV itself is not a factor in determining who gets it, those of us who are positive are more likely to have outbreaks.

In the early days, a shingles outbreak in two separate nerve groups along with HIV+ status was considered a defining criterion for AIDS diagnosis. An outbreak along a single nerve group alone was not.